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Linda CrowhurstME Attack by Linda Crowhurst Let us be clear there is real injustice going on with ME.The Psychiatric lobby have high jacked the name "ME" and filled it full of fatigue patients whilst alienating those of us with a genuine neurological disease and leaving us without any viable health care service.When is the nation going to awaken to this great con ?When are they going to see that the wool has been deliberately pulled over their eyes ? So they cannot see the injustice and abuse and neglect going on in the name of ME.It is time to make a stand and speak up loudly until we are seen and heard.We have to be seen and heard because failure will mean more deaths.ME AttackI do not want my ME to define me
So I try to define it
to clarify it
to demistify it
to explain it
so others understand
the intensity, complexity and
torment of symptoms I experience
so I can be free from it
Despite being trapped in it
It is hard enough to b…

It is not "reassurance " that is required, but proper respect and treatment !!Greg Crowhurst27th March 2011 Permission to Repost Myalgic Encephalomyelitis , is a serious biomedical disorder; only those in the final stages of terminal cancer or dying of AIDS can possibly know what it is like to experience the level of sickness that a severe ME patient has to endure for years, often decades on end .There is simply nothing more devastating then, than for a sufferer to be shoddily dismissed by a Neurologist , as my wife was once, as "just needing reassurance".

I am so angry that this is still happening to friends. I know the depths of despair that this rejection engenders; far worse, I can tell you, than any slap to the face ! It is grossly unethical.

The fact is, any Neurologist who dismisses ME as a psychiatric condition , is potentially in breach of the GMC regulations, concerning the legal requirement for doctors to keep up to date with developments in m…

March 26th 2011London march against the cuts today.We pray today for wisdom, integrity and openness to change; that the Government will see the extent of dissatisfaction about the level of cuts it is making. We pray that they will hear the people's voice and not carry on the punative measures that will affect so many people of all ages and groups, especially the disabled and the sick,particularly people with ME. We pray that all is held in the Heart of Love where miracles happen and joy is complete. We place our trust in God's goodness and the power of prayer to change hearts and minds.

We pray for a peaceful demonstration today, where the voice of the people is justly heard and answered.

Lord I cling to you in my need
Keep me safe and help me to know
that in you all will be well.

Friday afternoonI am screaming
My body is screaming
at me.
Throbbing intolerably
many sensations assault
my sense of time and
place.
My body is expanding
and contracting on some
unseen invisible level
invisible to the world
Totally clear to me
My vision is moving in fact
I have a sense of
motion when still
My eyes are expanding
and contracting along with
everything else
Leaving me giddy and
out of gear with reality
I cannot bear this anymore
I cannot bear this right
now
I am screaming Who will
hear ?Linda Crowhurst25th March 2011

"She shouldn't have had to go through this for this length of time, she should have the right to end her life if she chooses, I know it isn't right, but is it right for someone to suffer like this for this long??? You decide....." Someone posted this comment in relation to our YouTube video : When will ME be treated as the physical illness it is ?:

Yesterday Linda told me how the pain seems to stretch to about 4 inches outside her body. Her reality is horrific , utterly tormenting; Linda lives in intense suffering; the commentator is right.

....but kill herself ??

We sit together, Linda and I, her in her suffering , me in my inability to take away the pain and my struggling to think what to do , after sitting beside her for 18 years of ever-deepening , throbbing agony.

And maybe we notice a daffodil, or a bud . Often a bird, the robin, the hilarious blue-tits.

Or maybe a neighbour starts sweeping their path, a child gets out a ball and Linda's symptoms go into ove…

March 19th 2011Japan, Libya, BahrainAs we pray tonight for peace, healing and comfort around the world; the mysteries of Light bring us much needed radiance in the darkness, wisdom in the void, truth in the uncertainty of living in a damaged and hurting world. The Mysteries of Light are the Perfect companion for our Lent journey, as they bring a much needed focus to the emptiness of the desert. They help us focus our attention on Jesus’ ministry, as it builds up to the climax of Easter week. They begin by bringing awareness of the very real presence of the Trinity ,to our attention, in the first mystery, moving on to the wonder of Jesus mission:the transforming power of love where miracles are seen and believed through the miracle of the water into wine. Following on from the miraculous, we come to a much needed emphasis on forgiveness, reconciliation and mercy in the third mystery of Light: the main focus of Jesus Life ultimately, to bring mercy and lead us back to God, the Father, who …

Response to Irish Medical Times Cognitive behavioural therapy not harmful in chronic fatiguehttp://www.imt.ie/clinical/2011/03/cognitive-behavioural-therapy-not-harmful-in-chronic-fatigue.html The PACE Trial had nothing to do with ME . ME is a WHO classified neurological disease (ICD -10-G93.3). Page 188 of the PACE Trial Protocol states that neurological disturbances “are not necessary to make the diagnosis” . The Oxford criteria upon which the PACE and FINE trials were based specifically excludes those with neurological disorders. The PACE Trial conflated two diseases that the WHO categorises separately – neurological ‘ME/PVFS’ (ICD-10-G93.3) and psychiatric ‘Fatigue Syndrome’ (ICD-10-F.48.0) – and misrepresented the latter as the former. The goal of the PACE trial was to “was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability.” A feature of the Trial is how no biological measures were reported. Studie…

Rear window By Eva Caballéhttp://nofun-eva.blogspot.com/2011/03/rear-window-das-fenster-zum-hof.html The room is almost empty; nothing but a bed and an old bedside table without any decor or curtain, all in light colors. It seems calm and quiet.The woman sits on the edge of the bed in front of the window, looking at the sunlight, which is orange because of the sunset. She has a quick look out the window and then observes more carefully stretching her neck as if she is looking for something. She turns and talks to the young woman who has just entered the room with an ironic and concerned smile.Woman: Don’t you see how everybody is disappearing? It is no coincidence! They started to spray the park, day after day, while children were playing and parents and grandparents sat in the sun and chatting while watching them.The young woman puts her hand to her waist with a tired look and responds, gesturing with her other hand, while she snorts implying that she is tired of talking always about …

As a stakeholder for the UK NICE 'CFS/ME' Clinical Guideline 53 (CG53) I have today received an email notification from NICE that their review decision has been made and published. The text of the decision is pasted below along with NICE's urls from which the decision document can be downloaded as a pdf.

NICE state: "Because of comments received at consultation the review decision on this guideline was suspended until the PACE trial (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome ([PACE]: a randomised trial) reported on the 18th February 2011. The data presented in this study was taken into account to inform the final review decision. ...Through the process no additional areas were identified which were not covered in the original guideline scope or would indicate a sign…